23 years old with stage 4 colon cancer

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Euny0115
Posts: 4
Joined: Sat Oct 27, 2018 11:54 am

23 years old with stage 4 colon cancer

Postby Euny0115 » Sat Oct 27, 2018 2:49 pm

Reading so many amazing posts of survivors with stage 3 and stage 4 colon cancer has given me so much more strength to combat this hard period of life, dealing with my husbands cancer. However, I understand that cancer behaves very differently in each individual. Our oncologist gave us a very low rate of survival and wanted to see if there were anyone under the same situation as my husband who are doing well with their fight.

He went into surgery on oct 25, 2018 hoping to remove his sigmoid region of his colon with a few lymph nodes, only to find that the cancer has spread throughout his abdomin. The only information we were given is that the cancer has spread and that now it’s in stage 4... His heart and liver are yet to be affected by this disease. Hoping to get treatment ASAP.

My husband was only 22 turning 23 years old within days when he got diagnosed with colon cancer a few weeks back, early September. His blood work always came back normal. The only abnormal thing was the excruciating pain he was experiencing. Diagnosis took a long time because he had no family history and because of his young age. Atter being diagnosed with metastasis, at least stage 3 based on results from CT and PET scans, the doctors didn’t do anything. There was no sense of urgency. There was no immediate treatment plan. Surgery was what they told us was the best option, only to be scheduled a month after being diagnosed after we urged them to start something... On the surgery table, they discovered the cancer has spread... This was all at Kaiser Permenente in Seattle. We left his life in the hands of his oncologist, to whom we asked for any refferals if they can treat him anytime sooner only to be told “we are trying our best to fit you in”, “even if you get into any other hospital it will take a while before they get you started”. I’m wondering if this is normal or is this how we’re being treated because we are young. I have an aunty who got treated right away after being diagnosed...I’ve heard many stories from close friends of their family’s with cancer being treated right away... everything feels so unfair because he such a great guy and deserves more that this...


Moderator's note :
we have combined your first 2 posts here so you have your own topic
- Best Wishes
Colon Club Moderator's Committee

AppleTree
Posts: 248
Joined: Fri Mar 18, 2016 8:16 am

Re: 23 years old with stage 4 colon cancer

Postby AppleTree » Sun Oct 28, 2018 12:03 am

Even if it does take time to get set up with a 2nd opinion. I would do it. It can't hurt. A 2nd DR may be able to explain things better to you so you have a better understanding. And personally, I think people feel better with a plan in hand. I am sorry you are going through this. You really have to stand up, be an advocate and not let them bully you.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: 23 years old with stage 4 colon cancer

Postby rp1954 » Tue Oct 30, 2018 2:59 pm

I have a few suggestions that may be different but important. A lot of our younger members have had very dangerous mutations, like BRAF, and are not well controlled by conventional oncology.

One, do some extra blood testing yourselves. This is as simple as picking up the phone and dialing an 800 number or using a website, Life Extension/Quest, Labcorp. Better blood tests could help you make some changes to get ahead, buy some time, buy quality time, know where you are along the journey, and make lifesaving changes. In a hurry before chemo, I wouldn't even squabble with insurance or the doctors since they are not "standard" if you can afford a little money. Btw, if your parents can help you, now is the time.

We used these blood tests to decide what doctors and questions to ask:
Common lab tests with CRC that you should already have include, CEA, SGOT, ALP, Hgb, total protein A/G, bilirubin, WBC (neutrophils, lymphocytes, monocytes), platelets from the CBC; your MCV from the CBC
Commonly available lab tests, CA19-9, LDH, GGTP, 25-hydroxy vitamin D, ESR, hsCRP, PT/INR, AFP, quantitative d-dimer have information that you can use here. Some you may already have, half of them are very cheap tests.

Second, depending on your blood tests, there may be some better chemo/chemistry possibilities. We were able to restart a nicer chemo treatment 24 hours after surgery that had longer legs (years and years, never really pooped out, vs a year) where the drs themselves didn't even realize the chemo treatment was in use, just by looking at you. My wife still plays the piano, never had the common side effects that interfere with life.

These approaches also saved us a ton of money, where our company insurance in 2010 wasn't that great, more like first aid. Earlier discussions that may be useful, linked, and testing Also we do most of the treatments at home, whenever we choose - oral chemo, milder drugs, supplements and IV vitamin C.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

WarriorSpouse
Posts: 159
Joined: Tue Aug 16, 2016 9:02 pm

Re: 23 years old with stage 4 colon cancer

Postby WarriorSpouse » Tue Oct 30, 2018 10:36 pm

I am sorry to read that you are here on this forum at such a young age. You are in the right place for support, shared knowledge and information to prepare you for meeting with your husband's oncologists.

A couple of things to note from your initial post. I think it is normal to allow your husband to heal after surgery before starting Chemo / Avastin treatments, because it is difficult to heal while undergoing these treatments. One step at a time is normal in the process.

Many here suggest to get a second opinion at a major cancer center. It is worth it and you can take that treatment plan to your local oncologist to implement. You will find that the local guys will always take into consideration a specialist's treatment plan as long as they understand it, and it is a common practice at the bigger centers. Be your own advocate for your husband. He needs someone like you doing the research here and coming up with questions and suggestions during your appointments.

Use the search engine under "quick links" and start reading historical threads based on your husband's prognosis. Look up things that were specifically mentioned on pathology reports to learn more of what he is going through. CRC has many different variables, but there are many here to find prior posts with similar pathology reports and diagnosis.

Take a deep breath and take care of your own health too... There are many here that can help you along the way.
We are with you!
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

garygrover
Posts: 1
Joined: Tue Oct 30, 2018 5:34 am

Re: 23 years old with stage 4 colon cancer

Postby garygrover » Wed Oct 31, 2018 3:57 am

I am sorry to hear about your husband is a victim of cancer at a young age. However, Cancer is a shipwreck but there are lifeboats called "HOPE" and "COURAGE" waiting to take you to back to the mainland. All you have to do is swim to them and then paddle with all your heart. God Bless him and I hope he will get well soon.

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Phuong
Posts: 1461
Joined: Mon Jun 14, 2010 10:43 pm
Facebook Username: Phuong Ly Gallagher

Re: 23 years old with stage 4 colon cancer

Postby Phuong » Thu Nov 01, 2018 12:28 am

I was dx'd at 29 as stage 3 and have had mets to stage 4. At one point, I was told that I had an 8% chance of survival. I have now been at this for 11 years, walking this journey more like a chronic disease and not like the disease that's going to kill me. There is hope! That being said, I highly recommend getting second opinions and third opinions until you are comfortable with the team you have selected to do what's best for your husband.
Last edited by Phuong on Thu Nov 01, 2018 12:53 pm, edited 1 time in total.
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

radnyc
Posts: 306
Joined: Tue Apr 06, 2010 6:32 pm

Re: 23 years old with stage 4 colon cancer

Postby radnyc » Thu Nov 01, 2018 8:02 am

I would seriously consider what rp1954 suggests. In your case it’s time to think outside the box. Peace!
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Re: 23 years old with stage 4 colon cancer

Postby Cmac1275 » Thu Nov 01, 2018 9:56 am

Phuong wrote:I was dx'd at 29 as stage 3 and have had mets to stage 4. At one point, I was told that I had an 8% chance of survival. I have now been at this for 11 years, walking this journey this more like a chronic disease and not like the disease that's going to kill me. There is hope! That being said, I highly recommend getting second opinions and third opinions until you are comfortable with the team you have selected to do what's best for your husband.


THIS. This is why you come here. This is why you listen to the battle-tested advice, wisdom and encouragement from the folks on this board. Like RP said, get testing done. Seek help wherever you can get it. Definitely get second opinions and a third, if necessary.

You are not a statistic. You are an individual. You’ll have to become your most ferocious advocate. But I can promise you that there’s more you can do than your traditional oncologist will tell you. So keep seeking truth and support from any available source. Just take care not to overwhelm yourself. It’s a lot. But this is what it’s going to take.

Blessings and prayers to you and your husband.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

Nohogirl
Posts: 87
Joined: Sun Oct 14, 2018 12:15 am

Re: 23 years old with stage 4 colon cancer

Postby Nohogirl » Fri Nov 02, 2018 6:34 pm

Hello and am so sorry about your husband's diagnosis. I can only imagine the shock and devastation you are going through. I don't have much advice to offer you since we are new ourselves in this battle but i do want to wish your husband a good outcome of whatever treatment path you choose. Arm yourself with lots if patience, hope and courage.

God is great and miracles happen. Don't loose hope. Keep on fighting.
04/18 DH 49 diag.stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm including entire rectum out
Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
Regression Grade 3
10/29 Started Folfox

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GreenLakeGirl
Posts: 765
Joined: Mon Jan 18, 2010 5:55 am
Location: Pacific NW

Re: 23 years old with stage 4 colon cancer

Postby GreenLakeGirl » Sat Nov 03, 2018 2:04 pm

I'm in Seattle, and we have a group that meets monthly for CRC patients, survivors, and caregivers. Anita Mitchell is a Stage IV survivor and former Colondar model who leads the group when she's not traveling for advocacy.

Second Wednesday of the month, so Nov 14 is our next meeting. 7pm at the SCCA *guest* house near the flagship REI downtown. We have several stage IV friends in active, maintenance and remission mode. I hope one or both of you will consider attending.
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo

Euny0115
Posts: 4
Joined: Sat Oct 27, 2018 11:54 am

Re: 23 years old with stage 4 colon cancer

Postby Euny0115 » Sun Nov 11, 2018 12:17 pm

Phuong wrote:I was dx'd at 29 as stage 3 and have had mets to stage 4. At one point, I was told that I had an 8% chance of survival. I have now been at this for 11 years, walking this journey more like a chronic disease and not like the disease that's going to kill me. There is hope! That being said, I highly recommend getting second opinions and third opinions until you are comfortable with the team you have selected to do what's best for your husband.


You are our inspiration! Despite the tragic news, my husband is very hopeful he will overcome this battle with this disease. He is a fighter and he has so many people, far and near, rooting for him. He won't give up so easily. He had his first chemo session last week and is already seeing improvements, although we are dealing with some side affects of the treatment. We are also scheduled to be seen and treated at another hospital where we feel is more reliable. Hope to keep hearing of your fight Phuong!

Euny0115
Posts: 4
Joined: Sat Oct 27, 2018 11:54 am

Re: 23 years old with stage 4 colon cancer

Postby Euny0115 » Sun Nov 11, 2018 12:28 pm

GreenLakeGirl wrote:I'm in Seattle, and we have a group that meets monthly for CRC patients, survivors, and caregivers. Anita Mitchell is a Stage IV survivor and former Colondar model who leads the group when she's not traveling for advocacy.

Second Wednesday of the month, so Nov 14 is our next meeting. 7pm at the SCCA *guest* house near the flagship REI downtown. We have several stage IV friends in active, maintenance and remission mode. I hope one or both of you will consider attending.


Thank you for bringing this into our focus, we are both interested in attending the group session. We will try to get there, hope to see you there as well!

So I gave a call to SCCA hoping to get more information on the event but the person on the phone was not able to tell me anything. The session is on Nov. 14 on a wednesday at the SCCA house? will I be needing to sign up or make reservations?
Last edited by Euny0115 on Sun Nov 11, 2018 1:09 pm, edited 1 time in total.

henry123
Posts: 149
Joined: Sun Oct 08, 2017 3:25 am

Re: 23 years old with stage 4 colon cancer

Postby henry123 » Mon Nov 12, 2018 11:01 am

Stay strong.
If positive then something will work out.
Young ppl are able to recover from and withstand harsher treatments.
As suggested by many, do get urself tested for msi status as well as Lynch syndrome on top priority.
Totally different course of treatment based on results.
46yo M
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
2/18 2.3
4/18 2.0
Aspirin start
6/18 1.5 CT clear
8/18 1.3
10/18 1.2
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo


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